May 15, 2012

Are You Dead Yet?

SEVERAL YEARS AGO, when Dick Teresi was a volunteer at the Fisher Home Hospice in Amherst, MA, nurses assigned him a demanding patient. Thomas, who was young by hospice standards, wanted nothing more than to enjoy the heavy metal music of his youth and indulge his sexual fantasies. Teresi was determined to honor his patient’s wishes. The two watched a rock music video and, rules be damned, Teresi made arrangements for a red-haired, green-eyed woman—per Thomas’s specifications—to come to the hospice and dance naked for him. Clearly Teresi knows how to throw an end of life party. But when the end is truly nigh, things turn decidedly less festive. “Are you dead or alive?” he asks the reader. “Can you prove it?” If not, he warns, doctors may take the opportunity to make you an organ donor before you are ready to become one.

Teresi spent ten years writing his book. During this period, he admits, he was wracked with anxiety. He would wake up early, afraid for his life. Even worse was the worry that he would be declared dead, ready to be junked like an old car when, in fact, there were still reserves in his gas tank. “I trust my doctor with my life,” he says, “I’m just not sure I trust her with my death.” Perhaps his own morbid preoccupations explain why Teresi, the former editor of the now-defunct Omni magazine and several books including The God Particle (co-authored with Leon Lederman), abdicates his role as an objective narrator. He accuses the medical profession of sloppiness in the way it determines death. And he alleges that behind the haste is a “not-so-hidden agenda”: to take the organs of the “sort-of dead,” as he calls them, and use them as transplants.

The specter of premature burial has hung over humankind for centuries. As Teresi recounts in an interesting early chapter, the Greeks cut off a finger before cremation to ensure that death had taken place; and for the ancient Hebrews, the only truly conclusive sign of death was putrefaction of a body over the course of several (unburied) days. Medieval popes had a specially appointed officer, the camerlengo, whose sole job it was to pronounce papal death by reportedly tapping the Pope’s head with a small silver hammer and calling out his Christian name three times. What each method sought to confirm were cessation of heart and lung function.

In the eighteenth century, physicians came to agree that the nervous system, rather than the organs or respiration and circulation,was the seat of life. Thus, Teresi writes, began “the movement for brain death as defining the end of life.” But the medical side of the story did not begin until the 1940s, with the advent of the ventilator, or respirator. Before that time a person was either dead—that is, he was not breathing and his heart was not beating—or he was alive. If the brain stem—the primitive part of the brain that controls breathing—was badly damaged or destroyed, death followed in minutes. But ventilators kept the lungs inflating so that oxygenated blood could be pumped throughout the body.In fact, the concept of brain death was developed for those situations in which a person’s heart is still pumping and the organs are still humming—but the entire brain is beyond repair.

Enter the Harvard Ad Hoc Committee that published a landmark consensus report on the definition of brain death in 1968. Chaired by Henry Beecher, then a professor of anesthesiology at Harvard and justly well-known for his work on protections for human subjects of research, the committee comprised thirteen members, including John Merrill (a nephrologist) and Joseph Murray (a transplant surgeon who won a Nobel Prize for the first successful living kidney transplant). For Teresi, the fact of membership alone amounts to a smoking gun, evidence that the Committee was tainted by a fatal conflict of interest that put the well-being of organs before their prospective donors.

In truth, however, painstaking archival work has shown that Beecher was primarily concerned not with obtaining organs for transplant. His priority was to distinguish between patients who had zero hope of recovery from severe brain damage and those with at least a slim hope. The point of the Committee was to bring order to the still-chaotic and improvisatory practices of withdrawing cardio-pulmonary support in the neurologically devastated. In cases where there was no chance of recovery, Beecher thought the burden of proof was on those who wanted to continue life-sustaining measures. Transplantation was a secondary, albeit prominent, concern. This is Teresi’s sensational conclusion: “The committee members felt bad for the families of patients in a severe coma, and they proposed to make the families feel better by killing their loved ones [for their organs].”

Teresi prides himself on being a just-the-facts-ma’am journalist, let the policy chips fall where they may. Fair enough. But “just the facts” means all the facts, and at key points Teresi lets us down. He fixates, for example, on the fact that doctors no longer perform an EEG, or electroencephalograph (which measures cortical and brainstem activity), as part of the standard exam for brain death determination. Teresi sees this as a nefarious move, but the reason is straightforward: it was abandoned several decades ago when it became clear that a flat line or “isoelectric” EEG could be tragically misleading: a person administered certain kinds of medication could appear to be cortically dead, whereas a person with no brain stem or cortical function (that is, zero chance of recovery) could have a positive EEG if there was the slightest movement of the physician administering the test.

Most states follow the American Academy of Neurology guidelines on brain death, published in 1995. Two years ago, the Academy published an update to address the question, “are there any adult patients who fulfill the clinical criteria of brain death who recover?” Scouring the literature between 1996 and 2009, it found no published reports of recovery of neurologic function after a diagnosis of brain death using the criteria reviewed in the guidelines. This includes brain-dead pregnant women sustained on life support for months until the fetus was old enough to be born.

Towards the end of his book, the engaging author who greeted us at the start re-surfaces to say how he plans to approach life now that he is in his 60s. He avoids “tedious events, such as weddings, half of which result in failed marriages,” but he does make himself available to “people going through divorce, in which case my existential affectations can be of comfort.” For most of the book, however, the twinkle is doused, replaced by sneering accusations at the medical profession for gerrymandering the boundaries of life and death for their own foul motives. What happens to motorcyclists who don’t wear helmets and sustain brain injuries? “We punish them by taking their organs.” These jabs and histrionics detract from the book’s otherwise rewarding discussions of near-death experiences and on the evolution of the diagnosis of persistent vegetative state, wherein patients breathe on their own and manifest cycles of sleep and wakefulness (recall poor Terry Schiavo).

In the end, Teresi’s claim that organ shortages pressure doctors to declare patients dead is not convincing. Yet he is right that the shortage drives some maneuvers that have a whiff of desperation about them, from transplanting kidneys of questionable quality to finessing downward the actual numbers of people in need of kidneys, livers, hearts, and lungs. What’s more, serious ethicists and physicians debate whether brain death is necessarily the best place to draw the line for donation. What about people with devastating neurological conditions who are sure to die within months and who want to become donors before their last natural breath? Or, with parental consent, babies born with no cortical function and almost sure to die within weeks? To contemplate these thorny issues is to confront the limits of science as a guide to their resolution. With The Undead, Teresi joins a long line of writers who have grappled with end-of-life mysteries. Unfortunately, he is reluctant to grant that others, too, have done so in good faith.

Sally Satel is a physician and resident scholar at the American Enterprise Institute.